National Marfan Foundation Opens New Port Washington, NY, Headquarters

Contact:
Eileen Masciale
Consulting Director of Communications 
631-665-2163
publicity@marfan.org


NMF Education and Research Center Provides Education, Support and Research to 200,000 in the U.S. with the Marfan Syndrome and Related Disorders


PORT WASHINGTON, NY, December 3, 2003 - The National Marfan Foundation (NMF), established in 1981 to provide support and education for people with the Marfan syndrome, a potentially fatal connective tissue disorder, announced today the grand opening celebration and dedication of its new headquarters. The office is located at 22 Manhasset Avenue in Port Washington.


At the dedication, the NMF will honor Robert Boxer, M.D., Chair, Division of Pediatric Cardiology, Schneider Children's Hospital, North Shore University Hospital, for his 20 years of commitment to the Marfan community.


Originally chartered in Maryland, the NMF became an international presence in the mid-1980's while under the direction of Priscilla Ciccariello, now of Sag Harbor, who was the first chair of the Foundation. Ciccariello, a former librarian at the Port Washington Public Library, lost her husband, her oldest son and her grandson due to complications of the Marfan syndrome (two of her remaining six sons are also affected with the disorder). She operated the Foundation out of her Port Washington home prior to obtaining a lease at the Community Chest Building, which the NMF called home for 16 years.


Since the first office, the staff has grown to 16 employees, consultants and student-interns. Professional staffers oversee the Information Resource Center, which features personalized service through a toll-free number (800-8-MARFAN) and the Internet; medical education and consumer awareness programs; and a research grant program that has provided more than $1.25 million in grants since its inception less than 15 years ago.


"The new NMF Education and Research Center is an extremely attractive and efficient work place that opens the door for so many possibilities. Our Information Resource Center can be more effective and our programs have room to grow. We also look forward to hosting awareness and medical education events and research symposia here," said Carolyn Levering, NMF President and CEO. "Financially, owning the building also puts us in a much better place and positions us for more growth in the next few years."



The NMF Education and Research Center, which is 5400 square feet, was designed by Jeff Goldman, an NMF Board member and President of NEN Productions, in Bensalem, PA. The project was completed just prior to Goldman's sudden death in September 2003 from an aortic dissection caused by the Marfan syndrome.


The triangular building lent itself to many unique features designed by Goldman, including a triangular, glass-enclosed meeting space that is in the center of the office. In addition to the bright color scheme, Goldman incorporated aspects of the Marfan syndrome into major design elements. For example, the tile in the reception area recreates the DNA sequence of the gene that causes the Marfan syndrome.


"The NMF Open House on December 3 is both a tribute to our long-time friend Jeff Goldman,
who dedicated much of his creative talent to the NMF, and a celebration of the promising future for
the Foundation that has been made possible by our new headquarters," said Levering.


The Marfan Syndrome and the National Marfan Foundation


The Marfan syndrome is a potentially fatal genetic disorder of connective tissue. The Marfan syndrome and related connective tissue disorders affect approximately 200,000 Americans. Because connective tissue makes up the entire body, the disorder manifests itself in many body systems, including the skeletal system, eyes, lungs, blood vessels and heart. Many people with Marfan syndrome experience an expansion of the aorta. Without proper monitoring and
medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death.



Recent studies about the increased life expectancy for people with Marfan syndrome provide great hope and optimism, but only through increased awareness, earlier diagnosis and proper treatment can people with the disorder expect to live a normal life span.


The NMF was established to provide accurate and timely information about the disorder to patients,
family members and physicians; to serve as a resource for medical information and patient support; and to support and foster research.


To obtain additional information about the conference and to register, please call the NMF at 800-8-MARFAN.